I've Always Hated My Right Breast!

“Pray as though everything depended on God. Work as though everything depended on you.” – St. Augustine

This is a post that has been a long time coming. I’ve written and re-written it multiple times. I’ve questioned whether it’s worth the scrutiny that I could receive. But I truly feel in my heart that the time has come. I’ll preface it with this…This is my story, my experience, my life. It shouldn’t be taken as a personal attack against anyone.

Throughout everything I’ve experienced and witnessed in life, I still believe in the power of prayer, in its infinite possibilities to make change, to impact the world. But I don’t think it’s the only answer. When I was diagnosed with my cancer, the amount of ‘you’re in my prayers’ or ‘praying for you’ was incredible. I could actually feel the love, and boy, did I need it. When 30 monks in Tibet were chanting simultaneously, for six hours during my first day of chemo in my honor, I knew I had a power behind me like no other.

But if I were to be completely honest, t﻿here were times when I didn’t want to hear it, any of it. I was angry. ‘I don’t want your prayers,’ I would sometimes think. ‘I want this to be gone, done and over. And prayers aren’t going to do that.’ That latter? I still believe. I know that there are a number of reasons, both explainable and unexplainable, as to why my cancer is gone. That you could never know by looking at me (except for my perfect bra-less tatas), that I went through 10 months of pure hell 5 years ago. Some may think that it’s the power of prayer that rid me of it. But I know that if I would have just knelt and prayed, I’d be dead.

First of all, I got my cancer by mere dumb luck. Even though there’s a plethora of cancer on both sides (making my family tree look as if it had chicken pox), I’m truly negative for the cancer gene, a bewilderment to both my genetic counselor and my breast surgeon. I found my tumor by mere chance, doing a complete random, self-exam while lying in bed one night. I had an assertive breast surgeon that led me right into action – scans, tests, surgery, treatment. My cancer was so aggressive that waiting a mere month would have sent it to stage4. I stood up to my oncologist when she made a mistake with my prescriptions, with the help of my husband who had my back. I questioned my doctors, and I was assertive enough to make my point heard – and they listened. Two weeks after surgery, I went straight into 4.5 months of the harshest chemo (it’s not called the Red Devil for nothing) to 6 weeks straight of radiation, to forcing my doctors to order a PetScan to ensure all of that hell was worth it and that the cancer was gone, only to then go back under the knife for reconstruction and healing. I knew, throughout all of this, that just being on my knees to pray was not going to heal me. I need to take action for myself and my family. While prayer gave me the strength, I had to actually do the work.

There is nothing wrong with questioning authority, especially doctors or any public position whose purpose is to serve the people. It’s incredibly challenging to listen to an opposing view, whether it be medical treatment, how to care for someone, or even how an entire group is being oppressed. It’s all the same. It takes courage and endurance, and a humble acknowledgement that you may have been wrong in choices you’ve made in the past. You are sometimes forced to put your pride aside and stand up for what’s moral and right, for yourself, your loved ones or even complete strangers. It means you may have to think differently than you did before, than your family, friends and co-workers. It doesn’t mean you hate the person or persons you’re questioning. It means that you’re so passionate and confident about your beliefs that you would rather be questioned and scrutinized than end up on the wrong side of history, and for some that means life or death.

Then, there are things that simply can’t be rationalized or you’ll go insane. Why was my body able to handle the worst of the worst and my aunt not able to handle a fraction? Why did her cancer continue to spread, despite all of her efforts and mine cease? Why has a school mom who went through my near exact treatment, been diagnosed with what they say is an incurable leukemia and not me? For them and so many more, prayer is what gets them through, but boy do they fight with as much energy they can muster.

At the same time, there are so many people who are so far down the rabbit hole that they physically, mentally and/or spiritually can’t pick themselves up. That no matter how hard they try, they can’t. And prayer alone especially won’t do it either. It’s easy to sit back and judge these people – they caused they’re own homelessness, they aren’t hard workers, they just expect handouts. Judging is so easy but is so wrong. You see, I experienced just a sliver of that judgement when I had cancer. When I didn’t look sick but was filled with so much Red Devil I looked like a drug addict, asking for a seat on the subway, fumbling and bumbling down the street. People looking at me as if I was contagious, as if I had caused my own downfall. It was embarrassing. On the other hand when I did look like cancer, I’d get the extreme looks of sympathy and concern. After experiencing this day after day, I realized that the looks weren’t always for me. My cancer reminded others of their own. Maybe they just received their own diagnosis or that of a loved one. Maybe they are taking care of their dying partner. Or maybe even they buried their own child. We’ve absolutely no idea the pain, the struggle, or the history of someone’s downfall. And it shouldn’t be up to us to judge them or keep them in their pit of misery. I’d bump into people all the time, fell asleep on someone’s arm once – all the while, none of them really knowing what was going on with me.

While prayer is sometimes the only thing a person has to offer, the majority of us have so much more to give. Whether it be a dime to homeless person, a voice for the oppressed, an advocate for a loved one, food to the poor – the list is endless. Prayer is an amazing and wondrous act of faith and spirit. Its powers are limitless. But getting on your knees to pray for others is easy. It’s when you have to pray for yourself to have the courage and bravery to do what’s right that’s the most difficult. And then actually doing it, even more.

Five years ago this week, I started chemotherapy for my Stage 3b Breast Cancer (diagnosed less than three months prior). For those of you that don’t know, here’s a quick summary…

I felt a lump, got a mammogram & ultrasound, 2 out of 4 biopsies positive for cancer (including one in the lymph node); scans proved cancer no where else and I tested negative for cancer gene, however I opted for double mastectomy. Pathology reports confirmed 15 tumors in the right breast, none in the left, and 8 out of 24 lymph nodes removed were cancerous. Within four weeks, I’d started the harshest of chemos (including the Red Devil), and continued for a total of six sessions over four and a half months. Then I would have six tattoos mark the areas in which I’d receive radiation five days a week, for six weeks straight. Ten months after it all started, I was cancer free.

Sounds pretty easy when I put it into as few words possible, but of course, as you can imagine, it was anything but. I didn’t mind losing ALL of my hair (and yes, the carpet does indeed match the drapes). I didn’t mind the stares when I looked like cancer, but didn’t feel sick at all. I didn’t mind the ‘down’ days after chemo, in which my friends made sure my family had meals provided for them. I didn’t even mind getting new boobs, in fact, it’s one of the perks – pun intended.

I know the feeling when someone you know gets cancer, and you want to do anything you can to help. Believe me when I tell you, that if you let me know you’re getting a mammogram or biopsy, I will be that pushy person that will ask and make sure you’ve covered all of your tracks. But this is only because I’ve been there. And I’m one of the fortunate ones that came out unscathed. (Well, except for the Estrogen blocker I’ve got to take for another six years, which throws me into pre-menopause, but whenever I feel a mood swing come on, I just remind myself of my perky boobs. Did I tell you I don’t need to wear a bra? See, now you wish you had cancer too.)

But when folks who haven’t been through it, learn that a friend or loved one has cancer, it’s different. You want to help anyway that you can or know how. And no circumstance is the same. I mean, what are you supposed to do, right? It’s at this moment where I must confess that I hate the color pink and everything it stands for – awareness, i.e. marketing and sponsorship dollars for corporations. Now, don’t get me wrong. When my own mother, sister, and multiple friends ran/walked in my name, it meant the world to me. But with the millions raised each year, less than half of that actually goes to research or helping those with breast cancer directly. Read for yourself at a couple of articles below (there are MANY more out there, for sure):

(By the way, if you truly want to know the history of the pink ribbon, research Charlotte Haley, who passed away in 2014, and watch the documentary Pink Ribbons, Inc. to get the closest insider’s look on the pink industry.)

But to show you the positive side…when I wrote about my mental side effects from Tamoxifen, the estrogen blocker, a college friend messaged me that her father was the creator of this drug in which I cursed. It took all the courage within me to email him, and after several exchanges (in which he shared how the drug got passed through the senate and to the public, their research, and homeopathic remedies to the various side effects), he shared his newest creation – curing cancer without any surgery, pain, stitches or recovery. Check the story on his local news channel a year ago HERE and his Ted Talk HERE.

I’m saying this last one, because there is research, new procedures, techniques. Not all treatments fit each person, just like every ribbon isn’t the color pink. The only way this disease can be fought is if we stop treating every patient the same, and instead treat the individual person. We are each unique creatures, whose bodies react differently to every circumstance. I go in tomorrow morning for yet another check-up. Vitals will be checked, blood will be drawn, and questions about my body will be asked. I’ll wait to receive a call only ‘if’ there’s bad news. I’ll see new and familiar folks. I’ll walk past the infusion suite where I received my chemo. I’ll see faces that look and don’t look like cancer. It always brings back the biggest concoction of emotions.

And 8 hours later, I’ll be celebrating Halloween with my girls, friends and Graham. Life goes on…for me and I’m grateful. But I wish all of that money that went to corporate pockets instead could have saved the 40,000 lives from this past year, who don’t have moments like these anymore. And I bet you, somewhere in their closet or on their dresser is the color pink. And what good has it done?

One of the many things I learned when going through a health crisis (from Sophia’s seizures, to my dad’s bypass, to my own diagnosis) and one of the things I continue to echo whenever anyone tells me she/he or a loved one is sick – never go through any of it alone without an advocate. Here are some examples as to why…

SOPHIA’s SEIZURES – when the patient doesn’t have a voice
I learned it the hard way. Sophia was just two when she had her first round of seizures. As a parent, to sit there and see your child convulse, stop breathing, and then lie limp… well, it’s jarring to say the least. But then to have a clear head to make decisions and speak on behalf of your child is something they don’t train you for in any of the Dr. Spock books. After having 3 grand mal seizures in 4 hours, cat scan and blood work coming back negative and no sign of fever, the next scariest event is looking up at a half dozen medical professionals with dumb-founded faces, not knowing what on earth as to what to do next. A night in the pediatric neurology unit with an EKG (30 wires attached to her head), in a prison-like crib, little Sophia woke the next morning with the specialist saying there was no sign of epilepsy, that she was fine and was ready to discharge her. But I knew better. I showed the doctor how she couldn’t grab anything out of my hand, how she couldn’t sit up on her own. Turned out having 3 grand mal seizures in 4 hours for a two year old makes one lose all motor skills. She had to learn how to stand up, walk, hold my hand, all over again. We spent another two nights in the unit. Feeling extremely helpless, I demanded that they allow her twin sister private time with Sophia in the playroom, in order to jumpstart her system. And it worked! You could see Sophia’s frustration with not being able to do the simplest tasks she watched Penelope perform with ease. The next morning I took her off of the EKG, we got onto the floor together, and watched as she then limply walked and jumped into my arms. No doctors could have done or seen any of this. Only an advocate. We left that afternoon, to get life back to normal at home. (She was later diagnosed with having ‘complex’ febrile seizures – had another round of seizures, less physical, later when she was 4 and was able to verbalize what was happening, but has since grown out of them.)

WHERE ARE MY MEDS? – when the patient doesn’t make the mistake
Ok, here’s my situation – I’ve been diagnosed with stage 3b Breast Cancer. I’ve had a double mastectomy. I’ve chosen my form of treatment – 4.5 months of chemo, 6 weeks straight of radiation. I’ve been ‘stuck in my head’ for months and the first day of infusion arrives. I’m to get the harshest form of chemo out there, one of the three nicknamed ‘the red devil.’ I’m sitting on the table ready to talk to my oncologist before getting started. She’s casually asks, “So, did you take your steroids?” Steroids? What steroids? “Um, no, you didn’t give me any steroids,” I reply hesitantly. She states firmly, “Yes, it was one of the prescriptions I gave you last week. You can’t start chemo without it.” Maybe she did give me a steroids prescription. But I filled the other two, why wouldn’t I have filled that one? How could I have done this? What do I do? In an instant, a voice leaning against the wall says, “You didn’t give her a prescription for steroids. You gave her the two for anti-nausea, but nothing that involved steroids.” This is Graham, my husband and personal advocate. He’s been with me at nearly every doctor visit, and apparently he was at the one in which my oncologist forgot to give me a required prescription of steroids. The embarrassed look on the oncologist’s face is forever stamped in my memory. Now, I know what you’re thinking. How could she forget something like this? Something that was required in order to take my chemo? The very reason I’m there and the whole purpose of her job. Yes, it sucks. But, c’mon. She’s human. Everyone makes mistakes. Grant it, when doctors make them, the effects are much more drastic. But I like my oncologist. I do. And maybe the day she gave me the scrips, she was ‘off her game,’ or her two year old had a sleepless night. I don’t know. On the other hand, I knew, thanks to my advocate, that it wasn’t me that made the mistake. So, I armed myself with the confidence to say, “I can’t leave here today without starting chemo. I’ve worked myself up too much to just walk out and start all over. I’ve set aside all day for this. I’ve got nothing else to do. So figure out what needs to happen and let’s take it from there.” She looked at me, acknowledged my command, left and came back ten minutes later with a plan. My infusion that day took nine hours instead of five, but I did it. Now the world wouldn’t have ended if I didn’t start right then and there. But it was the first time I was on the patient side of advocacy, and felt extremely grateful that someone was a voice for me, keeping track of something I couldn’t. Because frankly, it’s hard enough to be living with the disease, disorder, whatever. But to have to keep each and every part of the equation straight in your head, it’s overwhelming to say the least. That’s why you need an advocate.

THIS ISN’T WORKING – when the doctor doesn’t listen
“I’m throwing up a lot.” “The neuropathy was bad.” “It’s difficult to eat.” These are things that a dear friend tells her doc. (She wishes to remain anonymous, so let’s just call her George.) George is a single woman living in New York diagnosed with a stage3 cancer, and has a shitload of friends and family who love her, including myself. Her body is already sensitive to light and smells, and she suffers from severe migraines. All of this told to the oncologist, who repeats several times that this form of chemo is easy, and normal people don’t suffer severe side effects. “She’ll be fine,” she continues to repeat several times. Again, we remind her that George’s body isn’t normal, but she continues to reassure us that all will be ok. Chemo#1 comes around – blisters form on the bottom of her feet, the neuropathy is slightly debilitating, but the nausea is what sends her to the ER. After telling her doctor the effects of the first session, Chemo#2 goes much smoother, some side effects continue but there is no nausea, and George sleeps it off for three days. However, three weeks later Chemo#3 hits like a load of bricks. George starts feeling the side effects while still getting the infusion. She can barely walk out of the doctor’s office. She talks as if she’s drunk, with slurred speech. You can see the muscles pulsing on her calves. And the nausea…oh, the nausea. I start taking time codes of the sequences, to ensure that it starts to be less frequent and that she stays hydrated. (This is when being the caregiver truly sucks.) After 12 hours of hugging porcelain, George is able to keep liquids and some solids down. We make a decision to call the doctor together Monday morning on speakerphone. George says how the side effects were bad and how she was throwing up a lot, and that she’s hesitant on getting a port installed. It’s as if the doctor doesn’t her anything she says. I immediately interject. I talk in detail about the instant neuropathy while she was still sitting in the chair, the difficulty walking and talking. (Note: MOST side effects take a couple of days to settle in.) Also, that George wasn’t just throwing up ‘a lot,’ but I gave the exact details – started at 5pm about every half hour and then between 1am-5am was about every 15-20 minutes until it subsided. And how it wasn’t until 11am the next morning that she was able to start drinking fluids. And then truly talked through George’s fear of getting a port installed. The doctor immediately changed course – the port won’t be installed, and for the 4th treatment she won’t do an infusion just the pills. George’s energy immediately lifted (which goes to show how much of a mind game it all is). “I didn’t even realize that was an option,” she whispered to me. We then make an appointment to talk in person in another week. I turn to George, and tell her, in case she didn’t know, “There are people who have a worse diagnosis than you and opt for no chemo treatment & do just fine. Also chemo isn’t a cure. It’s an insurance precaution for the doctors to say that they did everything they could.” Now, when the doctor appointment came around George didn’t want to me bother going since her dad was in town, but I insisted that she have a consistent voice. Besides repeating everything above, we reminded the doctor that George wasn’t a ‘normal’ patient, that she shouldn’t be treating her as a ‘normal’ patient but instead should be treating the individual. (Yes, it’s sad that you have to say this to medical professionals.) But the real kicker? When I asked the doctor to look at the detail treatment of each of the first three infusion sessions, to figure out why the second was so much easier than the first and then the third? Come to find out, George got an intense anti-nausea drip (the top one, the one that cost me $350 in co-pay) during the second infusion, but not in the third. Somehow there was miscommunication between the doctor and the nurse tech and it was omitted. Again, human error. But again, the patient suffers.

HOW TO BE A PATIENT ADVOCATE. Below are my top 5 ways that you can best serve as a patient advocate:
1. LISTEN TO THE PATIENT: It’s her/his body and her/his choice. While you may not agree with what she wants to do, you as the advocate are there to listen and then help her make it happen. But also, to listen to how she feels (physically and mentally), and then interpret that to the medical team so that they have a clear understanding of what is actually going on.

2. LISTEN TO THE ENTIRE MEDICAL TEAM: Not just the doctors. The nurses and techs are just as informative, and sometimes can think outside the box more than the doctors who get paid twice as much.

3. WRITE DOWN EVERYTHING: You may forget things as well. Having everything written down as back-up is the best way to keep track, have reminders, hand off to another advocate, have everything in one place. I can’t count the times I’ve gone back to my notes, for myself and others. However this doesn’t just mean things said at doctor’s appointments, but also time codes of side effects, diet, medicine intake and more. This is the patient’s Bible and to be taken seriously. Also, a timeline of all events aids in working with the insurance companies.

4. BE THE VOICE FOR THE PATIENT: I don’t know why I’ve experienced doctors bypassing what the patient says and listening intently to what the third party says, even if it’s the exact same thing. Ask any and all questions, even though you may think them silly or inappropriate, and be persistent. But most importantly, you’ll find that you are the prime line of communication between each and every specialist and medical personnel. You are the one that relays info to the nurse, tech, specialist, because even though he/she may have passed the doctor in the hallway, they could very well have left one detail out, which could be the most important at the time to the patient.

5. GET A COPY OF EVERYTHING: The patient has the right to have all copies of scans, reports, and tests. And the patient should be able to talk through the scans, reports and tests with the doctor directly. This is also important for insurance reasons, and, if needed, when you need a second opinion. Having everything on hand and readily available makes life easier. And, as you can imagine, in a health crisis, one needs things to be made as easy as possible.

Today marks my four years of being officially cancer free. And while you think it warrants throwing my arms up in the air, and singing “Alleluia,” know that I have to actually pull forth every bit of inner strength to hold things together. You see, two days ago I turned 41, so my birthday is now forever partnered with today, my cancerversary. This time frame is also partnered with my 6 month oncology check-up, in which I’m poked and prodded, blood drawn, and sitting and waiting to hear IF something is wrong. That’s right, if everything is ok, you don’t get a call. Nerve-wracking, right? (Add Memorial Day and soldiers dying for our freedom to the mix, and I’m two tissues shy of being a top Kleenex investor.)

This year has also been yet another filled with gut-wrenching outcomes. The death of several friends due to cancer, along with the diagnosis, treatment and recovery of some amazing women – it never ends. I’m constantly trying to keep perspective, without over-analyzing and getting stuck in my head. Because if you’ve EVER had to deal with a life-altering event, you understand how easy it is to get stuck in your head, and that nothing good comes out of it. So, this past year, I keep going back to the question asked of me, “Mommy, are we poor?” Let’s rewind…

One morning last fall on our walk to school, Sophia, out of no where, asks, “Mommy, are we poor?”

My head starts to spin. “Why do you ask?”

“I was just wondering, are we poor?” She responds matter-of-factly.

How do I respond? According to whose terms? I mean, we rent, don’t own. We don’t have a car. I am an advent believer in public transportation and Zipcar. However, we have several TVs, computers, cable/internet. We don’t travel much because it is costly, but we do fly at least twice a year to see either family or to our annual summer getaway. While cancer did wipe out the little life savings we had, we did pay off all of the debt (with some help, but we did it). I do have more on the credit cards than I would like, but not impossible to be paid off within the year. Also, this is my factual child. She’s normally not the one contemplating the creation of the universe and what happens when we die. (That’ll be a post for a different time, starring our little Ellie.) She is all about things being black or white, no gray area in between. So when she asks me this question, I am taken aback. But if I learned anything from dealing with these kids, it’s safest to answer with a question.

“Well, is there anything in life that you need that you don’t have? Not that you want, which is different. But anything that you NEED? Clothes, food, like that?” (You see where this is going?)

“No, we have all of that.”

“There are some people in this world, this country, even in New York and our neighborhood, maybe even kids you go to school with…they don’t have things that they need to simply live a healthy and safe life. You could always want more than what you have. And those with money that call themselves rich, aren’t necessarily happy. Money can’t buy happiness. Money can make things easier, yes. But I believe that being rich means something more. We have a roof over our head, clothes on our back, food on our plates, plus books, journals, movies, and more. But we also have our health, and more importantly, we have each other. If you ask me, I think that we’re very rich.”

“You’re right, we are very rich!”

And with that, we all went on with our day. Since then, my mantra has been, “I am rich,” and I’ve been screaming it to myself lately. Reminding myself has been both continuous and necessary. It’s getting me through this ‘Sun in Gemini’ month, opening me up to everything living or dead, bringing me back to life, putting my life back into perspective. “I am rich, I am rich.”

For as long as my girls can remember, almost every time they’ve gone to the garden (our community oasis in West Harlem) they received a mango. Victor, an 80 year old retired postman of Puerto Rican descent, would see them coming and plan his delivery. We never knew where he got the mango (grocery store, home or off the back of the truck – the latter is the most likely), but he’d stride over with the biggest grin, chuckling quietly to himself along the way, as if he was the only one on the inside of a joke. He’d tenderly tap one of the girls on the shoulder, and she turned around as he’d present the mango in slow motion as if it were a delicate flower. Seeing the girls’ eyes brighten and mouths water at the site would bring him more joy than you ever thought imaginable.

Victor Benitez passed away this past Friday at the age of 85, on Earth Day, succumbed to brain cancer. It progressed more rapidly than anyone could have imagined, having only been diagnosed in February. He returned to NYC with his family at the forefront, no other place they’d rather be. In my last talks with Victor, he remembered me telling him years ago how I’d rather go through cancer over and over again than to ever have to watch a loved one fight it. That it’s the caregivers, the family and friends, who can only watch and wait, that it’s the hardest on. He understood this. He may have not been able to express his gratitude for it, but he was forever thankful.

For those who were fortunate enough to know him, your heart is broken, but you also have a smile on your face because you know that’s what he would have wanted. Always so full of life, and ready to throw a handshake and a hug to each and every person he came into contact with. You could feel the warmth emanating from the shake of his head or the wave of his hand from hundreds of feet away. And that laugh….oh that laugh! When he laughed it was the deepest of belly laughs and you couldn’t help but join in, even if you didn’t understand what he said that got it all started. For those that never knew him, it is his presence every weekend at the garden and in the park they will miss most. Knowing that Papi won’t be around, well …it’s just not going to be the same each summer without him.

He was a husband who thought the world of his wife. He was a father who loved his children dearly. He was a grandfather who doted on all of his grand-kids and the kids of others. And he was a dear friend to hundreds. When I told my girls about Mr. Victor’s passing, the first thing they said, in unison albeit, was, ‘No more mangoes?’ Then it sunk in. We won’t see that smile any longer, won’t see that giant hand wave from afar, won’t get another bear hug and won’t hear that laugh that tickled our insides. But we know that where he is now, he isn’t suffering, nor is he in pain. He is where we all know him best, behind the wheel of his heavenly gator, driving around until his heart is content. As for us? Well, I know that many things will remind us of Victor, but for me? It’s the mango, that simple. As I close my eyes, all I need to do is say the word and I’m reminded. And I smile.

You’ll be one at some time in your life, whether you like it or not. And I’m not talking about the natural caregiver as a parent (which is a whole ‘nother blog). I’m talking about the one whose life is turned upside down, has a whole new ‘normal’ (sometimes with no end in sight), all the while living the day-to-day life that can go completely unnoticed by the world around him/her.

Even before my own cancer, I never knew how people did it. A sudden accident turns your child completely immobile. A flood takes away a home and forces you to care for your ailing mother. A terminal diagnosis given to your spouse that can last months or sometimes years. I had seen all of these and more before my own cancer and watched in awe as the caregivers adjusted their normal lives, in almost all cases, without hesitation to the new normal which few can describe but unfortunately many experience.

It wasn’t until my own cancer that I saw it. When you’re sick, friends and family want to help, as that is all they know they can do. (And let me tell you, as hard as it is, please let them bring you food, shop for your groceries, do your laundry, take your kids for the day. It all helps more than you know.) I am that person the moment I hear of a friend or loved one with cancer, doing anything I can to feel helpful. Yes, being the supplier of edibles and green relief counts.

But it is the true caregiver that I never want to be. I mean, of course I will, when the time comes. I know I will do my part and step up to the plate as best I can. However, it’s the standing on the sidelines, feeling helpless, watching as your loved one suffers, that I know will be the hardest. All the while, you cook the meals, keep up with the cleaning, manage life. Then there’s the emotions that we all feel but are the hardest to acknowledge. The feelings that emerge simply because we’re human that become the most overwhelming.

The feeling of guilt is one that I feel all the time, even without a tragedy. I blame it on being a Recovering Catholic. The guilt of not being the sick one, of not being able to do more, or if you live far away, not being able to do it at all. The guilt can eat away at you without you even being aware of it. Guilt ….what a fucked up feeling.

Then there’s the feelings of anger and resentment at the ailing loved one, as if it’s something that could have been avoided. You know in your heart that it’s irrational, but the feeling lingers, and at times grows and takes over. There’s anger at the world, the doctors, insurance companies, and more. There’s resentment at other friends and family members who don’t carry your burden, either by choice or by reality.

The anxiety and worry of how you’ll handle the additional responsibilities. What will happen if the sickness progresses and a decision needs to be made? If something happens to you, who will take your place? Or if you become the patient, will someone do the same for you?

Then there’s grief, of all kinds. The sadness of an envisioned future lost. The loss of time and love, and then of life itself.

As I write this, there are more than a half dozen loved ones of mine dealing with cancer at all varying levels. (At this time, they’ve not determined that it’s contagious, so it’s not my fault.) A friend, a mother, an aunt, a veteran, a father, a sister. If you’ve read my posts before, you know I’ve said, “Cancer knows no prejudice.” And in the same sense, neither does being a caregiver. And in dealing with cancer or any illness, I believe it’s the same mental game. Stay out of your head, as the worrying and what ifs aren’t productive. Acknowledge your sadness, feel it, experience it – and then move on. And then handle it with a passion and resilience that you never thought you could muster, but somehow becomes your superhero strength.

But in the end, I would still much rather live through the cancer fight over and over again as long as I’d never have to see a loved one experience it directly. It’s the feeling of helplessness that I can’t stand the most. So please, give me your cancer. I’d happily take it, so you don’t have to.

I’ve found myself only mentioning breast self-examinations during either the month of October, when all of the other media outlets push their pink agenda (which normally only lasts for the first couple of weeks) or when my cancer free anniversary comes around (June 1, 2016 will be four friggin’ years!) But due to, yet again, having several women – all under the age of 40, mothers to adorable children and dear friends of mine – be diagnosed with breast cancer very recently, I’ve felt the need to push my own agenda during these ‘off’ months.

Before I write my opinion on this, know that I’m a Stage3b breast cancer survivor. Due to the amount of cancer history in my family, I was lucky enough to have my GYN insist that I start mammograms when I turned 36 despite what the ‘recommendations’ suggested. AND I was even luckier to have found my extremely aggressive tumor (which turned out to be 15. Yep, that’s plural) by doing a breast self-examination (BSE), at the age of 36 before I even went in for that coincidental suggested mammogram. AND I had a breast surgeon who had the balls enough to demand that I have a Pet Scan prior to any surgery or treatment to ensure that there was no cancer present anywhere else in my body.

I admit, I am one of the lucky ones, whose stars magically aligned and am now alive for it. So when the U.S. Preventative Services Task Force released an update this past January to their recommendations regarding Breast Cancer Screening, I became livid. First of all, who the hell is this USPSTF? And second, who the hell listens to them? To answer my own questions……

“The U.S. Preventive Services Task Force is an independent, volunteer panel of national experts in prevention and evidence-based medicine formed back in 1984. The Task Force works to improve the health of all Americans by making evidence-based recommendations about clinical preventive services such as screenings, counseling services, and preventive medications. All recommendations are published on the Task Force’s Web site and/or in a peer-reviewed journal. It is made up of 16 volunteer members who are nationally recognized experts in prevention, evidence-based medicine, and primary care. Their fields of practice and expertise include behavioral health, family medicine, geriatrics, internal medicine, pediatrics, obstetrics and gynecology, and nursing. Task Force members serve 4-year terms. Members are screened to ensure that they have no substantial conflicts of interest that could impair the scientific integrity of the Task Force’s work.” To read more on who the Task Force is click HERE. And as far as who listens to them? Well, apparently everyone. Your doctor, the media, the old lady on the corner for all you know.

So when I hear ‘guidelines’ being changed (which to be honest has always seemed to me to have more to do with the cost to insurance companies than the safety of the patient), I literally want to rip someone’s throat out. But I soon found out, their guidelines haven’t changed. They’ve just been repeating their same advice on BSE since 2009, and not providing any substantial research to prove differently. Even though there have been changes to the Task Force’s views on mammograms as early as January 2016 (click HERE), there has been no change in over seven years to their recommendations on BSE. In 2009, the Task Force recommended AGAINSTteaching BSE, saying that “there is moderate or high certainty that the service has no net benefit or that the harms outweigh the benefits. Furthermore, they say that the evidence of clinical breast examinations (CBE) is inadequate.” Since performing a BSE saved my life (thus I know the benefit), I have been searching for the ‘harm’ that they’ve yet to provide in detail. The only statement I could find from the Task Force was that, “The potential harms are thought to be small but include false-positive test results, which lead to anxiety and breast cancer worry, as well as repeated visits and unwarranted imaging and biopsies.” That’s it. Basically, no need to waste your doctor and insurance providers time and resources, just because you think you know your own body.

I decided to see what other institutions thought. The National Cancer Institute (www.Cancer.gov) says that even though monthly BSEs are promoted there is no solid evidence that they are effective in reducing breast cancer mortality. Their research? “The only large, well-conducted, randomized clinical trial of BSE randomly assigned 266,064 women factory workers in Shanghai to receive either BSE instruction with reinforcement and encouragement, or instruction on the prevention of lower back pain. Neither group received any other breast cancer screening.” Seriously. Their finding? After 10 years of follow-up, both groups had nearly the same number of breast cancer deaths, 135 and 131 respectively, and women in the instruction group received more breast biopsies and diagnosed benign lesions than the other group. (for their complete findings click HERE.) Again I ask, what harm is there? That we, as women, shouldn’t worry our little heads? The idea of us feeling our breasts may lead to mental anxiety? Or worse, a visit to the doctor? A demand for a test? Finding something there that isn’t deadly, but still, in fact, is there?

Finding any other research is limited. From Leningrad to the UK, they say that women who performed BSEs had more biopsies, doctor visits and such with no improvements in breast cancer mortality. Only Canada, dear sweet Canada….”Women who examined their breasts visually, used their finger pads for palpation, and used their three middle fingers had a lower breast cancer mortality rates.” So is everyone else just doing it wrong?

Luckily there are a number of sites that provide illustrations, videos and more on BSE. I prefer the site, www.healthination.com. Multiple videos can be found HERE.

Breast cancer deaths are preventable because of 2 things: early screenings and physical exams – PERIOD! And to make an overall change or a blanket statement that is to relate to each and every individual is assinine and ignorant. I say – INSIST THAT YOUR DOCTOR GETS YOUR SCREENING APPROVED, pressure your physician to do a clinical breast examination. And most importantly, know your body by doing your own breast self-examination periodically. You are the client and product. It is your life. Your decisions, your choice! #badrightbreast #feelyourself #breastselfexam

Princess watching mom get her hair shaved.

I'm a full-time working mom of twins, who first discovered I had cancer at the age of 36 by doing a self-exam. This blog is meant to be a means of expression of what I have and will go through during this process. I hope it to be a means of information for you. I write bluntly and honestly and am open to all comments and questions.